And We’re Off!

This post is written by Shelley Hendrix, Autism Speaks’ Director of State Advocacy Relations. She currently resides in Baton Rouge, La. with her two children, Liam and Mairin. Liam was diagnosed with autism age the age of two in 1998. She began advocating on behalf of her son and other children with autism almost from day one.

It’s easy to tell the first Monday back after the New Year in the Government Relations department at Autism Speaks. It’s full of sparks as rockets start taking off in every possible angle in the race to introduce autism insurance reform legislation in the states. States spend all fall hammering out policy details, knitting coalitions and growing their grassroots advocates and then BANG! It’s off to the races. This mad pace continues throughout the first half of the year in the scramble to see whose states will achieve the objective this spring legislative session.

Earlier this week, Oregon entered the fray as the first state of 2011 to introduce autism insurance reform legislation with both a House and Senate version of the bill. Oregon has a legislative session that only meets during odd years. The team of volunteers in 2009 worked very hard but we just didn’t reach this objective. We know more now. We are armed with more data and more states have enacted legislation. Oregon’s volunteer leaders have spent time cultivating that fresh ground and sowing the seeds necessary for success.

Their time is now.

When you look at our map of the United States you see a swath of green across the nation utilized to signify the 23 states that have passed this legislation in the heartland, along the Gulf Coast and up the Eastern Seabord. But the west coast has remained unphased. All children with autism need appropriate health care coverage.

How is it possible that our nation has an entire coast where no coverage exists for our children to access the treatment and therapy they need?

2011 is the year to resolve that injustice. And Oregon Autism Advocates, I hope you will get involved and change your children’s destinies.

Martin Luther King, Jr. once said, “Change does not roll in on the wheels of inevitability, but comes through continuous struggle.”

With Martin Luther King, Jr. day approaching on Monday, if you live in a state that has not yet turned green, listen to his words and let that motivate you. Do not give up. Do not sit quietly and depend on others to do this hard work for you. Roll up your sleeves, get busy and get it done. It is worth the struggle.

Yesterday, I spoke with a parent from a state whose law was recently implemented. Their child is severely affected by autism – and is a teenager. Their family had lost hope. With the advent of the child’s new ABA therapy program, because they have access to this treatment, he is now learning independent skills. He is making small meals for himself. He is doing his laundry. He can perform chores around the house. He is contributing to the family unit and because he is more engaged it has changed the dynamic of the family’s life and his.

These laws are changing lives.

They can change yours.

If you live in one of the 27 states that have not passed autism insurance reform and want to get involved to change that visit www.autismvotes.org and sign up today.

Good luck Oregon. We are rooting for you!

KEY: Green - Enacted law Red - Autism Speaks endorsed bill in 2011 Yellow - Working on bill in 2011 Blue - State not currently pursuing legislation in 2011

Even though Florida is flagged as a green state and has passed some legislation, it’s effects are very limited. The legislation excludes self-insured employers which is growing in size, so many Floridians are still unable to get coverage for their children. We need to pursue legislation that will provide some assistance to everyone, even through employers that are self-funded and not fully-insured. I wonder if this type of limitation exists in other States as well, or have we been successful in getting even limited coverage applied to all insurance benefits?

Same w/ Pennsylvania…if the Co. is self insured and the employee has a child w/autism…..you’re out of luck for the health insurance paying for any therapies….This loop-hole needs to be addressed as long as the company has the required number of employees (50+ employees).

Same is true for the State of Texas….self-funded companies here in Texas do not have to abide state regulation for covering therapies for autism. That’s great that we passed autism coverage regulation in Texas but we need to fix this huge loop hole with self-funded companies here in Texas too. It’s so frustrating…

While Pennsylvania has a lovely green color to it, there is an interesting hitch to the way things work here. I was diagnosed as being HFA in 2007 at age 44, and my teen-age daughter was officially diagnosed this past summer as being HFA, though she was being treated the past 3 years as being likely HFA with other issues. Our previous insurance coverages had a contracted rate of roughly $80/session, with us making a copay and the insurance making up the difference. That is typical across all insurance providers but one. We now have Health America, who has a contracted rate of $40/session, and with our $40 copay, they pay NOTHING!!! Talk about giving lip service to the law… we are left paying for our therapy totally out of pocket. So just because coverage is mandated does not mean that you really have covering.

As a mother of an autistic 4 year old, I am extremely alarmed to learn that the Republicans in the House of Representatives are busy readying legislation that would effectively end all autism insurance coverage. I live in Illinois, which with 22 other states has enacted laws requiring insurance coverage for autism treatment. Without this coverage, there is no way I could pay for the ABA treatment that my son’s doctor says he needs. My son has made great progress with this treatment. However, the new congresspeople want to enact legislation allowing insurance companies to avoid state regulations by selling insurance across state lines. If this happens, no insurer will issue policies from states requiring autism coverage, and all autism coverage will effectively vanish. I do not know what I will do if this happens. My son needs his therapy, but I can’t pay for it all out of pocket. What can be done to prevent this from happening?

As a grandmother to 2 grandchildren with autism, I can say that Illinois autism insurance law is one in name only. The children are insured under a self-funded policy, so ABA is not covered, nor any other services. The promise that Barack Obama made in his presidental bid about help for autism was just a smoke screen. My grandchildren need help, but I doubt if anything will change to make that happen.